WHO WE ARE

who we are header

WHO WE ARE


The Butterfly Children Fund team shares a diverse range of personal experience with EB including individuals living with the disease, parents and friends of children with EB, and professionals in the EB medical community – all working together to support children and families impacted by EB and giving them the chance to fully experience life, winter sports, and a community of peers with similar life experiences.

who we are

OUR HISTORY

In 2003, Matt and Susie Warta’s daughter Kate was born with Dominant Dystrophic Epidermolysis Bullosa. In the first few months of her life, they received a crash course on the disease and its impact on patients and their families – particularly those with Recessive Dystrophic EB, the more serious form of the disease. Joining forces with the physicians and staff at Children’s Hospital Colorado and the Children’s Hospital Foundation, they together created the EB Family Assistance Fund to assist RDEB patients and their families with the incredible expense and financial hardship associated with the disease.

The group’s initial fundraiser, “Slopes for Hope,” was a day-long family adventure aboard the Ski Train and on the slopes of Winter Park. It was at this event where Kaycie Artus, a Physical Therapist who had spent more than 20 years working with children with RDEB at Children’s Hospital Colorado, had an idea. Combining her years of experience as an instructor in the Adaptive Ski Program in Winter Park with the knowledge and experience from her years as a PT, she believed it would be possible for children with EB to ski safely using bi-skis with fixed outriggers. She left the ski train that day determined to give children with EB the opportunity to ski and enjoy the mountains in a way they never had – and the idea for Camp Spirit Colorado was born.

In 2016, with Kaycie as President, The Butterfly Children Fund was created as a new charitable entity with a three-part mission: to honor the original commitment to support EB families through the EB Family Assistance Fund; to continue to host Camp Spirit Colorado each February; and to now utilize a portion of funds raised each year to support the groundbreaking research taking place in the EB medical community.

QUESTIONS?

Contact Susie Warta (303) 523-4297
630 Glencoe Street, Denver, CO 80220, US